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LIVING WELL WITH PD

LIVING WELL WITH PD

LIVING WELL WITH PD

What is
Parkinson's disease?

​Parkinson disease (PD), documented in 1817 by physician James Parkinson, in his Essay on the Shaking Palsy, is the second most common neurodegenerative disease after Alzheimer’s disease. 

It is a chronic, progressive, neurological disease that destroys the cells in the mid brain which produce "dopamine", one of the chemicals that transmits movement control signals. When approximately 80% of these cells no longer produce dopamine, one or more of PD's primary movement symptoms begin to appear: resting tremor; slowness of movement; stiffness; and/or gait or balance problems. Other symptoms such as small cramped handwriting, lack of arm swing, and decreased facial expression may appear.

It is estimated that some people with PD may also experience symptoms such as depression, anxiety attacks, or cognitive impairment. In addition, certain functions controlled by the autonomic nervous system may become affected, such as respiratory, blood pressure, and gastrointestinal. Every patient is different and may not experience all of the above symptoms.

Who Can Get PD?

PD affects about 50 percent more men than women, but the reason for this discrepancy is unclear. While it occurs in people throughout the world, a number of studies have found a higher incidence in developed countries possibly because of increased exposure to pesticides or other toxins in those countries.

The average onset age is 60 years and the incidence rises significantly with increasing age. However about five to ten percent of people with PD have "early onset" disease that begins before the age of 50.

What is the treatment for PD?

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​Parkinson’s disease can be effectively managed with medication, lifestyle choices, and, in some cases, surgery.

Since motor symptoms of PD are caused by decreased dopamine levels in the brain, most medications are aimed at replenishing or mimicking the action of dopamine, and can be very effective in controlling the motor symptoms of Parkinson’s disease. Other types of medications are used to treat the non-motor symptoms.

Patients benefit from taking an active role in their healthcare. Daily exercise, proper diet and cognitive stimulation are very important aspects in the treatment regimen. In addition, taking steps to maintain mental well-being results in more effective management of the disease.

For some patients, surgical placement of a deep brain simulator can be useful.

All patients should discuss their treatment options with their physician, a neurologist, or a Movement Disorder Specialist specializing in the treatment of Parkinson’s disease.

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​How Does
Parkinson's
Progress?

At this time, there is no known cause, cure, or prevention for Parkinson’s disease. Ongoing research is searching for answers and there are many options available to help those with Parkinson's to lead a full and productive life. ​

 

Most people's life expectancy won't change much because of Parkinson's.  However, some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection. The most important thing is to manage your condition as best you can with the support of specialist healthcare professionals, care partners, family, and friends. 

Is there a cure?

​Parkinson's affects everyone differently. The symptoms and how quickly the condition develops will differ from one person to the next. For many people, the condition can take years to progress to a point where it has a real impact on their daily life.

The symptoms  most often associated with Parkinson's are tremor, rigidity (stiffness) and slowness of movement. Not everyone with Parkinson's experiences the same combination of symptoms. Also, how Parkinson’s affects an individual can change from day to day, or even from hour to hour – symptoms that may be noticeable one day may not be a problem the next. Many of the symptoms can be treated or managed with medication and therapies. 

Newly Diagnosed

RECENTLY DIAGNOSED

A New Diagnosis of Parkinson's disease?

​Hearing the words, “You have Parkinson’s disease,” is life changing. For some, a Parkinson’s diagnosis may mark the end of a long and frustrating search to explain a collection of different and seemingly disconnected symptoms. For others, a Parkinson’s diagnosis is a complete shock, filled with feelings of disbelief and despair. Every Parkinson’s diagnosis brings a new and unexpected journey.

Parkinson’s is not life-threatening and it is progressive. This means that symptoms and effects of Parkinson’s will change over time. This disease is complex and can affect many parts of the body, ranging from how you move to how you feel and how you think and process. When you are first diagnosed, the sheer amount of information and the uniqueness of each person’s experience of Parkinson’s can be overwhelming.

People with Parkinson’s can and do lead fulfilling lives. An important part of living with Parkinson’s is understanding how it affects you and how to manage it. It may not always be easy to maintain a positive outlook, especially immediately after diagnosis, but be diligent about searching for information, resources, and support. A new outlook on life is generally a positive effect of being educated and diligent about advocating for your own health and needs. 

If you've just been diagnosed with Parkinson's,  you may find it helpful to think about questions to ask your medical professional at your next appointment. Making a list of the questions you want to ask will help you feel more prepared.

Make your questions as concise as possible,  you may even want to give your list to your medical professional  at the beginning of the appointment. If anything is said that you don’t understand, it is appropriate to ask for a clarification. It is best to full grasp what you need to do when you get home.

Some questions you may want to ask include:

  • I’m concerned about a particular symptom. What can help?

  • How soon should I start medication?

  • What type of side effects might I get from my medication?

  • I have another medical condition as well as Parkinson’s. What should I do?

  • Which other health professionals can help me? 

  • I'm feeling stressed and down about my diagnosis. What do I do about it? 

  • How often will I see you? When will I have my next appointment?

  • Can I have more time with you?


Remember that many healthcare appointments can be short. If you have several things you want to talk about, tell the receptionist when you call to make an appointment. They may be able to schedule the amount of time that you need.

What to Do After A Diagnosis Of Parkinson's disease?

Can You Be Employed With Parkinson's?

​Many people with Parkinson's continue to work for a long time after diagnosis. However, you may need to make some adjustments. 

​Everyone with Parkinson's experiences it differently and the decisions you make will depend on your personal circumstances. The best thing you can do is get as much information as you can about your options regarding your employment and financial planning. If your treatment is carefully managed and you have plenty of support, it could be possible to continue working for as long as you want to.

Making adjustments to help you stay in work could include the following:

  • Make sure your treatment is appropriately managed. Talk to your Parkinson’s specialists and team members.

  • Ask an occupational therapist for help if you're having practical problems at work. Speak to your employer about getting an assessment.

  • Talk to your employer about what support is available. Remember that your employer has a duty to offer support and make reasonable changes.

  • Think about the type of job you have and how your condition affects you. Some jobs are more compatible with Parkinson's than others, so you may find it helpful to consider alternative employment.

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Young Onset Parkinson's

YOUNG ONSET PARKINSON'S

​About 10 to 20 percent of people with Parkinson's experience symptoms before age 50, which is called "young onset" or "YOPD." While treatments are the same, younger people may experience the disease differently. Scientists are working to understand the causes behind young-onset Parkinson's.

What Is Young Onset Parkinson's?

Is There Support for Younger People with Parkinson's?

Although everyone with Parkinson's wonders what the years ahead hold, this may be top of mind in those who have a longer future with PD. Concerns often center on the potential implications of the disease on personal, family and professional desires and responsibilities.

A support group of other people with young-onset Parkinson's disease may help you address some of these unique challenges. Look for a YOPD group — either in-person or online. Find a group that fits your needs or even consider starting your own.

PD Carepartners

PD CAREPARTNERS

The Role of PD Care Partners

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Caring for a loved one with PD can be a challenging job, especially as the disease progresses. The best preparation for caregiving starts with education and asking questions of healthcare professionals. Early after a PD diagnosis, more emotional support and less hands-on care are generally required. 

​People with Parkinson’s disease rely on carepartners for a wide range of support — from driving them to doctor’s appointments to helping them get dressed. As the disease progresses, dependence on a carepartner increases substantially. Carepartners can help people with Parkinson’s adjust to the disease’s effects on the body. And knowing that a loved one is cared for can help the entire family adjust to the diagnosis.


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But the person with Parkinson’s disease isn’t the only one who should be cared for. Carepartners must take care of themselves too as it can be a complicated and physically and emotionally draining experience. See the following recommendations to help keep your energy, spirit, and physique engaged and able to continue the gratifying work of caring for a loved one

​Many resources are available online and public libraries have literature on the disease. Whenever possible, accompany the person with Parkinson’s to their medical appointments and ask questions of the doctor, nurse, and social worker.

The areas to assess include your loved one’s needs—both your perceptions and theirs, your home environment, and your own health, emotional state, and other commitments. The carepartner has to determine how much they can and can’t do themselves and what type of outside support is needed. It is also important to assess current and future financial issues such as health insurance coverage, employment (both carepartner and the person with Parkinson’s), managing expenses, and if/when to secure Power of Attorney.

Learn All You Can & Be Prepared 

Take Care of Yourself

​Probably one of the most important, and sometimes difficult, things carepartners can do is to take care of themselves. This includes maintaining mental and physical health by making and keeping your own medical and dental appointments. 

As a carepartner, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem.
Join a support group for carepartners if possible. Support groups help you meet people who are going through what you are going though, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humor.

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​Get help—don’t try to do it all alone. By getting help, a carepartner can lessen their sense of isolation, and it gives you more confidence in your own caregiving ability.
Having help increases your ability to think creatively and helps you get those needed breaks. Help is available through local and community services. These include neighbors, friends, places of worship, senior centers, adult day health, Meals on Wheels, and door-to-door vans. For a fee there is in-home care for help with cooking, bathing, dressing, and meal preparation. Additionally, a social worker from your health plan or hospital can connect you with other services.

Ask for and Receive Help

Continue Fostering Your
Relationship

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​Lastly, maintaining your relationship and communication with the person with Parkinson’s can be the most challenging and rewarding aspect of caregiving. As Parkinson’s disease progresses, the roles change and the person with Parkinson’s may go from being an independent head of the household to a dependent person requiring a significant level of care. 

Research shows, however, that despite high levels of strain, carepartners with good quality relationships have reduced depression and better physical health. Remember, as a carepartner, your service to your loved one is beyond measure in terms of love, depth of care, and concern.

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